Monday, April 2, 2012

Day 6 and nothing has changed :(

We've now been here 6 days, and to be honest with you, I don't think that Abby is feeling any different.
When they tested her for her CMV level on Saturday, it was exactly the same as when we got here.  The other bit of bad news is that Abby's white blood count dropped again once the neupogen wore off, so she's on another round of 3 neupogen shots.  We're thinking that the virus is what is bringing down her WBC, so when we start to kick the CMV, her WBC will improve too!  Now, she still has no appetite, and when she doesn eat or drink anything, she feels sick and usually ends up with a trip to the bathroom. I don't think they'll send us home today, but maybe tomorrow or Wednesday.  When they do send us home, she'll keep her picc line and I'll have to administer the meds through that.  I haven't forgotten how nervous I was when she went home with her picc line before her transplant, it is like a direct line to her heart, and that makes me a little tense.  We will have a home nurse that will come check it though, and that will change the bandages.  I'm saying all of this, but I don't really know what's going to happen for sure, we haven't even seen the doctors yet today.  Abby does have an echo today as well.  Today is supposed to be our regualr clinic day.  I tell you what, the echo better look normal, or this momma is going to blow her top!!  I think we can only handle one thing at a time.

We are lucky enough to have Brock here now too!  He came up yesterday on the shuttle and will probably be here until tomorrow.  It's taken some of the pressure to keep Abby busy off of me.  Even though they usually end up quitting every game because they think each other is cheating! It still has been fun and has lightened things up a little bit.    Brock spends lots of time checking out the nurses and techs and seeing if anyone is available :)  Today, Brock has an appoinment with a doctor at TOSH so we can figure out what's been going on with his ankle.  Again, I hope it's an easy fix, our plates are already full enough.  We should know more about that later today. 

Last night was a great night.  My friends Mauri and Jill from Intermountain Healing Hearts showed up bringing chocolate and fun things to do with them!  We spent hours just laughing and getting to know each other.  I swear that it felt like we were long lost friends even though it was the first time we had ever met.  There is just some connection that heart moms share, it's hard to explain it, but it is obviously there.  I've shared this connection with the other heart moms I've been able to meet as well. It's so perfect to be able to talk to someone else that knows the ins and outs of  what we are going through.  The whole time they were here, the conversation was comfortable and hilarious.  They even discovered some of my secrets, but promised me that what happens in Abby's room, stays in Abby's room!!  You are all always welcome.

The other great thing about this visit is that the other heart transplant reciepient from St. George is right across the hall.  Megan is 19 and had a heart transplant 4 years ago.  She goes to Tuacahn High, and even though we had heard a lot about her, we haven't been able to really get to know her and her mom, Paula, until now.  Megan has spent a lot of time here this past year, but when she was able to go to school, she was in their choir.  Yesterday, the Tuacahn choir was passing through Salt Lake, so they stopped in and performed for Megan, and we were invited too!  It was so great to see, Megan just looked thrilled to see all of her friends and to feel like she was a part of it still.  Thanks for letting us be a part of it Megan and for being such an inspiration to Abby. 

Thank you to whoever went to our house and cleaned on Saturday, what a thoughtful thing to do.  My kids really appreciated it, as did I!  it will be so nice to return to a clean house.  Also, thank you to everyone that keeps checking in with me, I know I'm only in Salt Lake, but when you're inside all day, it feels like another planet. 

The doctors just made their rounds, and the latest news is that Abby will not be going home today or tomorrow for sure.  The earliest will be Wednesday, but it could possibly be through the weekend.  The problem is that Abby has no appetite and doesn't want to eat because when she does eat, she feels really sick to her stomach.  I think that Abby was a little surprised today, when Dr. E said the words, "If things don't change, we'll have to put in a feeding tube."   YUCK!!!  Last time we heard that, Abby became really good at forcing the food down, maybe today will be the same.  But, for now, we will just continue to try to beat this and to get home as soon as possible. 

Abby's new obsession to keep her busy, duct tape wallets!

Child life brought lots of crafts to keep us busy

The view from the walkway!

Okay, so we're bored!  Abby planking!

This one's for you, Britt!!

Thanks Patti and Wayne!

Some of our favorite nurses!!

Abby and Megan, our new hero!
Brother and sisterly love :)

Looking good Mina!

The Tuacahn choir



  1. feel better Abby! I feel like I know you all. I hope we get to meet someday! :)

  2. Thanks for sharing the pictures. My daughter goes to Tuacahn and she loves it there.